In January 2011, after a journey that included an adventure into New York City after Newark had a power outage and closed all flights amidst a snowstorm, I arrived in Scotland for the first time. I spent two fascinating weeks learning about the various Scotland Projects of the International Futures Forum. The full report is included here. A series of posts featuring each individual project precedes this post. Comments and feedback welcome!

A series of recent articles and posts about prognosis brought this personal experience to mind. I found out that that my grandpa had late stage cancer two weeks before he died. That was six weeks and a surgery after everyone else in my family found out that he had stomach cancer that had spread to 90% of his liver. I was away at school and no one wanted to "burden" me with the news because my grandpa and I were very close. They told me that the surgery was for an ulcer and that he would be recovered so that we could go for our much anticipated trip to Japan to participate in a YMCA Peace Conference that summer. After the surgery, the oncology surgeon reported to the family that he had "never seen someone alive with that much cancer." When I returned home at the end of term, my mother couldn't stop crying as she told me that grandpa had cancer. I was in shock, "how serious?" 'Very.' "We should go then." 'We have flights to leave tomorrow.' When we arrived, he was in the hospital. His belly was distended and he was puffy like I had never seen him, or anyone really. He put on a good show for me, as he always did. Just three months before, he had driven from Toronto to Connecticut for Easter to visit me at school; he brought me containers full of rice krispy treats and chocolate chip cookies and had come to see that I was "OK" at school. I was so happy to show him the school that I loved and to meet my friends. Most of all, I was thrilled to see him, because I missed him most of all my family. Every spring and fall, he would come to stay with us for a couple of months; he was stricter than my parents but we also broke lots of rules and ate lots of good food. Mostly, we would be together. Me working on homework; he watching Japanese samurai soap operas on TV. Since I was away at school, I hadn't realized that he hadn't visited that spring or fall. One night in the hospital he awoke in a panic, confused about where he was. He tried to leave his bed in the middle of the night. When we arrived in the morning, we were debriefed about the episode and assured that he was being well managed. He was significantly more sedated. I noticed the chart at the foot of his bed said "full code." I asked my Mom why he was full code, if he was dying of cancer, wouldn't we want him to die peacefully, not with his chest being compressed and heart being shocked. It would be a violent way to die, which was inevitable at this stage. My Mom talked to my grandmother and they spoke with the doctor who added a "do not resuscitate" to his chart that day. From that night on, my Aunt stayed with him overnight. He died the next night.The fortunate thing was that two days before he died when he was still lucid, I spent some time with him. I read him the lyrics of a song "Turn, Turn, Turn," which it turned out is inspired by the passage of Ecclesiastes 3:10 "To everything there is a season and a time for every purpose under heaven." That was as much as we spoke directly about death, and I told him that I loved him and thanked him for everything that he had given me. He thanked me. I didn't know then why he thanked me, but he did. We said, goodbye to each other. No one else in my family said goodbye. I was 16. When he died, everyone in my family was surprised. They didn't realize that he was "that" sick. It turned out that my grandmother hid the severity of the diagnosis from the two younger daughters (mid 40s adults). Even my mom, a retired nurse, had been on the phone the day before arranging to fly across the country for a week before coming back to spend more time. It always perplexed me that no one knew that he was going to die.This video about the McGruck Effect struck me as potentially providing insight into what happens in the disconnect between patients/families and physicians at the end of life.

Physicians are trained to understand a patient's history, to make sense of shifting lab results and to assess the patient's physical condition. Increasingly, the understanding of medicine lies in complex matrixes of testing, and the art of medicine remains in applying those normative figures to this individual patient. Much to the physician's disbelief, my grandfather did not present for clinical testing until his cancer was more extensive than the surgeon had ever encountered. He lived two months beyond that surgery, and in his whole life, he only spent two weeks in the hospital. The two weeks at the end of his life. What clinicians see in the hospital are clinical accounts, lab results and people at their most vulnerable and debilitated. Clinicians are trained to value the medical facts over subjective perceptions of understandably distressed family member. It is no wonder that prognoses in clinical settings can be dire and inaccurate.As physicians communicate their clinical observations to patients and their families, it is also not surprising that families may see something different. While clinicians may explain the patient's status and family members may hear the information, family members will believe what they see. Family members make sense of the complex and confusing information by privileging the information they gather from being with the patient. Particularly in situations where a patient has lost capacity in some way, though debilitated, the family who frequently spend time with the person may see the person as more interactive and responsive than a clinician who visits only at brief intervals. One of the reasons that nursing and junior medical staff are critical voices in morning rounds in the hospital setting is because they spend more time "hands on" time with patients; they often provide insight into these differing perceptions. This is one hypothesis of why things get chaotic when death approaches. Everyone sees something different and the information that we know best is what we rely upon to create meaning. Clinicians see a patient whose lab results are declining; families see their loved one still showing meaningful engagement. Often both perspectives are accurate, relevant and important to a full understanding of how to make sense of the confusing information at the end of a person's life.My professional aspiration to mediate conflicts at the end of life stemmed from this personal experience where I could see the different perspectives and that none were hearing each other. I was fortunate to train with Nancy Dubler, who developed bioethics mediation as an approach to clinical ethics consultations from her experience that most of ethical dilemmas in clinical medicine were values conflicts that could be resolved by mediating in a conversation that leveled imbalances of information and power. As we move care to the community setting and as the end of life is increasingly in care homes or community-based care settings, how can we bring this wisdom from the clinical setting to community delivered care?How does it happen that no one knows? Why do things end up so chaotic at the end?

Excited to have lead article in Kaiser Permanente's Ethics Rounds, Winter 2010. This article presents a narrative about a painter visiting a museum to discuss the restoration of a painting as an analogy and provocative lens through which to explore the challenges of surrogate decision making. The article offers a framework to support surrogates in the difficult role of serving as the voice of another.

Last week, I had the great fortune to participate in Health Camp as past of Health Innovation Week at Kaiser's Garfield Innovation Center. An amazing day kicked off by Kaiser's visionary Jack Cochran, who heads the Permanente Federation and the dynamic Todd Park - CTO for HHS who invited hackers to envision new ways of seeing data using HHS data. In true innovation form, it was an unconference day. With everyone from entrepreneurial gamers to public health experts, clinicians to VCs, it was an AWESOME agenda created by the Health Campers. I invited people to join a conversation on Tech Tools for the Incapacitated Patient Alone- a person who lacks decision making capacity and who has no family or friends to assist them in daily living and/or in decision making in the clinical settings. This is a front lines clinical reality and a highly vulnerable population. Our unstructured conversation was dynamic and our group grew from 2 to 10 people curious and concerned about this unique group of patients.

WHO?We clarified whom we were talking about: People who have a disease condition that leaves them without decision making capacity (it may be Alzheimer's, aging, stroke, traumatic brain injury or developmental disability). With the increase in geo-mobility, increasingly people may become ill in an environment where they have no family, friends or adult children to provide care. With advances in medicine, people are outliving their spouse and friends, and some may even survive their children, leaving them alone without anyone to represent their voice when they lose the capacity to make decisions.

WHERE?We explored the variety of settings where these people who rapidly become "patients" or "conservatees" of the system might reside and we considered how those environments might benefit from new technology. People without capacity might be living at home or in a nursing home. They might be acutely ill and in the hospital, and their circumstance becomes an issue upon discharge.

WHAT? We identified possibilities for technology to support this patient population from the clinical bedside to daily living in the community setting. From household gadgets - is there a way to make a stove safe so that someone with fluctuating capacity can remain at home without being a risk to him/herself and neighbors? is there a way to use visual surveillance technology to allow people to safely remain at home while maintaining their privacy/dignity? are there better gadgets to detect & support decline that will make living at home longer possible for someone with fluctuating capacity? ﻿Thank you to all the people who participated! This was an exciting & important initial conversation, and we look forward to it continuing! There is a "Post a Comment" link at the bottom of this entry for reflections, comments, and responses to the questions at the end.Thoughts? Reflections? Reactions? How can we best approach these situations? What ideas do you have for technology tools that might help these vulnerable patients? When they are in the community? When they are in the hospital?

Transitions Case 4Stepping Up Levels of Care: When is the right time and who decides?

After reading the case, visitors are invited to share how one might approach this situation. There is a "Post a Comment" link at the bottom of this entry and you may use the questions for reflection at the end as prompts.Lois, a gregarious, charming 88 year old woman, lives with her cat "Pancake" in a multi-unit dwelling. Lois, a widow for 16 yrs, never had children and has survived all of her siblings. Her only family are great nieces and cousins (all of whom are in their 80s/90s) living in Australia. In her younger days, Lois was a patron saint of wayward animals (and a few stray people) and has a life tenancy with Pancake in her current home granted to her by a longtime friend and neighbor, Catherine, who had previously owned the building. A life tenancy means that she owns the right to live in her home, but she does not own an equity interest in the property.Without any family, another longtime friend and neighbor, Jean, holds her power of attorney for finances and health care. Jean, her husband John, and other neighbors assist with "big" grocery purchases. With the assistance of her "cadillac," an electric wheelchair, she goes out to a nearby street to purchase day to day groceries and sundries. Other neighbors in the home drop in to visit every day or two, to make sure she eats. Her primary care physician, Dr. Anderson noted that if every elder had the "neighbors of the block" to support them as Lois had, we might do OK with our aging population.Lois is severely limited in her mobility due to a combination of severe kyphosis (curvature of the spine), she is severely bent putting pressure on her stomach and lungs; as well, she has congestive heart failure, which leaves her breathless to walk across the room. Movement is quite difficult. She fell down the stairs 4 years ago trying to reach her "chariot," the cadillac, resulting in a broken collar bone and 6 week hospitalization and rehabilitation, but she recovered and now, manages at home independently with an aide, Lucia, who comes for 3 hours a day, 6 days a week.Last week, Lois tripped over Pancake's water dish and fell in her bathroom. Her aide, Lucia, had arrived and was making breakfast. Upon hearing a "thud", she went to the bathroom where she found Lois crumpled on the floor, crying "ow". Lucia panicked and wanted to call the ambulance. Lois, not wanting to trouble anyone, insisted that she was fine, and with Lucia's help, Lois got herself up. Her face bruised around her glasses, and her right arm was swollen, she didn't appear to have any broken bones, just a very stiff neck and back. Lucia called Jean, the neighbor in charge of Lois's affairs. Jean stopped by on her way home from work, and surveyed Lois, Jean was quite distressed. Lois looked terribly battered and bruised from the fall and her movement, already challenged, now seemed riddled with pain and discomfort. Lois was adamant that she was fine, but by the next day as her back pain and stiffness increased, Lois was persuaded that a trip to be checked out at the hospital would be OK.Admission through the ED and a full work up later, no broken bones were found but tests revealed a precarious spinal fracture that threatened instant paralysis if the bone moved the "wrong" way. Lois adapted to life in a neck collar, and by the time, it was ascertained that it was an older injury, Lois had been convinced that she needed to wear the neck collar and that only a slight movement was between her life as she new it and something quite dire. Nonetheless, dreadful bruising aside, she was recovering well and most anxious to return home to Pancake. It had been 7 days, and she was now at the SNF (skilled nursing facility), no longer actually requiring nursing level care, but not quite ready to get a "sign off" from the physical therapy part of the team, the team delayed her stay over a long weekend while addressing the question about where to discharge was addressed, the issue was whether to go to a facility where she would have more supervision and support, such as a nursing home or board and care, or whether it would be appropriate for her to return home to 24 hour care or the level of care she had previously.Though in the hospital Lois was cared for by a team of hospitalists and specialists; her primary care physician, Dr. A, remained her primary doctor and strongly recommended that she be discharged to a nursing home facility. Concerned about her mobility, the potential danger of another likely fall, the amount of support she needed to attend to her daily activities, the physician did not think that returning home would be in her best interests. Based upon the observation in the hospital, this week's physical therapist did not believe she was capable of returning home.Lois, on the other hand, was quite aware of her condition, and she believed that she was fine to return home. She was no less mobile than she had been in the past, other than the minor nuisance of a neck collar and the threat of certain death (or paralysis which for her would be like death) if she moved incorrectly, nothing had changed. Lois is determined to return to her comforts of home and Pancake, the cat, whose welfare she was charged with looking after by her dear departed friend, Catherine. Lois lacks the financial resources to afford a nursing home and feels confident that at home, where she has no expenses of rent, she can manage with her limited means until she will be 100. Lois, who is fiercely independent and prefers to care for others rather than being cared for, made her wishes clear, and was growing impatient to get out of the hospital.Jean, her friend and surrogate concerned for her well being and safety, chose to support Lois's decision to return home. Jean had seen Lois home through much more dire situations, and while the diagnosis of the spine fracture had been scary, Jean is confident that Lois will be able to function at home. Jean favors more care, something that Lois disagrees with, and Jean intends to see if Lucia would increase her hours so that Lois would have more supervision at home. Though she has a roof over her head, Lois has limited means to support herself. Thus, suggestions to increase the hours of her helper are repeatedly rebuffed and she recently reduced a housekeeper from weekly to twice a month to manage her budget. Lois will not leave Pancake (the cat), and no care facility will take a cat. Further, Lois is extremely reluctant, even fearful, of leaving her apartment because it is the only "thing" that she has. With a life tenancy, she retains the right to live in the property until her death though she has no equity in the apartment. Given her limited resources, her housing presents an important asset and she intends to retain it as long as she possibly can and as along as she needs to care for Pancake, this is their home.Dr. Anderson anticipates more trips to the ED, this is the 3rd this year, and thinks the care possible at home is insufficient. Dr. Anderson is frustrated by Lois & Jean's decision and feels uncertain about how Lois can be best cared for in this situation. Dr. Anderson questions Lois's decision making capacity and wonders what to do at this juncture. Dr. Anderson strongly disagrees with Lois returning home and wonders whether he would be liable for anything happening to Lois if she returns home under his care yet against his advice.At what point, might it be appropriate for stepping up the level of care for Lois? What might that look like are they options - a staggered approach? Who makes this decision?Questions for ReflectionHow might one approach this situation?What are the issues raised in this case?Is this an ethical dilemma? If so, how would you articulate the ethical conflict?Do you need any additional information? If so, what is it and why/how is that relevant?What knowledge (ethical, legal, medical, philosophical) might be relevant for analyzing this case?What framework might be appropriate to assist thinking through this case?What might be a reasonable path forward? Are there multiple acceptable approaches?How would each of the different perspectives justify their response?Please leave comments, ideas, questions, and insights using the comments feature below. When you leave a comment, you may do so anonymously or with your name, but it would be very helpful if you indicated your role/discipline to assist clarifying your perspective. (RN, Geriatric care plan manager, family member, elder, caregiver, MD, MSW, Case manager, etc.)

Transitions Case 3Stepping Up Levels of Care: When is the right time and who decides?

This case presentation experiments with narrative perspectives to set up the case. After reading the case, visitors are invited to share how one might approach this situation. There is a "Post a Comment" link at the bottom of this entry and you may use the questions for reflection at the end as prompts.Snapshots on a Day: 1Elizabeth wakes up with a jump as the alarm blares. Hmgh, she rolls over giving into sleep that beckons. Oh, it's Monday- a Center day, Elizabeth perks up. She sits up in bed orienting herself in the room and enjoying the warmth under the blankets. She pauses as she is about to get out of bed, suddenly recalling the events of last night. No wonder she feels groggy this morning. Oh well, it can't be helped it just seems to happen.She struggles to recall what happened, ah, yes, she woke up needing to go to the bathroom in the middle of the night and her knee gave out as she was climbing out of bed leaving her stranded on the floor. She used her lifeline call button - instructing the voice in the box NOT to call her children, rather the caretaker across the street. Before too long, she heard sirens wailing and her little neighbor who has a spare set of keys to let the firemen in. Never could understand why it has to be such a fuss, but they never seem to call the right people. She thought to herself. The fireman insisted on checking her out and her little neighbor stayed until after the firemen had gone to help her finish on the toilet and get back to bed. This responding fire unit recognized her and seemed to know her little neighbor. Does this happen often, I seem to recall we've been here before. One of the firemen asked the neighbor. The 5th time in 2 months, her little neighbor responded in a matter of fact tone. Oh well, at my age who is counting anyway, Elizabeth thought to herself.Elizabeth pushes herself up to get out of bed, pauses to catch her breath and steady herself once upright, and shuffles to the bathroom. As she brushes her teeth, the front door opens. Lucy? Is that you? Goot Marning Meessus Elitabet. Good morning Lucy. Before long, the scent of brewing coffee seeps into the bathroom, farr you Meessus Elitabet. Lucy can you please help me with my hair, just look at this mess! Lucy brushes the knots out of Elizabeth's brown hair and curles it to her shoulders. I'm lucky I still have my own, Lucy. Most of the women at the Center, well, my age period, they don't, you know, they have wigs. Lucy continued to brush Elizabeth's course hair until it was 'just so' and then went into the bedroom to pick out an outfit. Lucy, I'll wear my purple and green suit today. Lucy reappeared with the purple and green suit almost before Elizabeth remembered finishing the sentence. What a wonderful choice, Lucy, yes I think the purple and green suit will be perfect. Lucy assists Elizabeth in getting dressed. Then Elizabeth shuffles into the dining room where she sits down to breakfast at a table set with fresh flowers, the newspaper and a bowl of cereal and fresh berries. Lovely, Elizabeth says breathlessly upon reaching the table. Where's my coffee? Heer, Meessus Elitabet. Lucy places the mug on the table. I wonder what the program is at the Center today. Oh, it's Monday.... Elizabeth hesitates, Oh, never mind, we'll see when I get there.Meessus Elizabet time to go. Oh! Engrossed in the newspaper after finishing her breakfast, Elizabeth lost track of time and took a last swig of now cold coffee. OK, let's go. As she stands up, she puts her hand on the table to steady herself. Damn knee, she thought. Then Elizabeth suddenly remembered last night. That nice little neighbor had come, always hears the fire engines she says. Maybe she'll come and visit me in the evening sometime, not just when the ambulance comes. Stepping out the front door, she feels the ocean breeze temper the warm LA air. I miss my friends back in Wisconsin, but Santa Monica sure beats the mid-west in winter! She thought to herself, though she knew she complained endlessly about being here - the weather was something worth celebrating. As she and Lucy stood waiting on the corner for the shuttle to pick her up, they saw the usual set of neighbors in and out on their various morning routines. Up the street, John was washing his car. Stan was walking his pug. Sarah popped out from her garden gate.Hi Elizabeth, Hi Lucy. The little neighbor waved and approached them, and asked with a smile,How is everyone today? "Wonderful"Goot marning Serrah, Lucy greets her with an ear to ear grin.

Great, I have to run to a meeting, so happy to see you looking well this morning. Sarah, do come by and visit me some evening.

Of course, Elizabeth, I will soon.As the car pulled away, Elizabeth suddenly remembered last night, Oh! I didn't even say thank you, she thought to herself.Lucy, did you know I fell again last night. I tried to call you but your phone wasn't working.Oh, deedant no you called.Well, fortunately Sarah heard the sirens and let the firemen in, good thing she has a key or knows where the spare key is, does she have a key, well, then she helped me get back to bed. Funny, she never says anything, as if it didn't happen. Nice young woman.Lucy nodded. Thinking to herself that she listened to the sirens with trepidation, but stopped responding to middle of the night calls 2 months ago. Lucy wasn't paid to come in the middle of the night and had grown impatient. Too many, too often, the girls needed to take responsibility for their mother and though Elizabeth said it was her knee, Lucy knew it was her drinking.Snapshot 2It happened again last night Jack. Mom fell out of bed. She is going to really hurt herself one of these days; this is getting ri-DICULOUS.

You know there is nothing we can do, by the time we drive over there, it's what 40 minutes later and she's left lying on the floor wondering what is taking so long. Remember last time, we just HAVE to let the fire department respond. If WE still lived down the street, WE could be THERE for her and respond, not like, RRRR. I thought the whole reason for Shyla taking over our house was to be CLOSER to Mom, then why the heck isn't she ever THERE? And if she isn't going to ever be THERE, then why not get Mom into a nursing home?Why? Why NOT?! THIS is irresponsible, she's 88. This is CRAZY. My d--- sister doesn't give a crap about Mom.Look getting angry and into the bad blood between you isn't going to help you or your mother. Don't you start in on me now, aren't you on my side Jack?

Of course I am but if you want to help your mother.IF? IF? OF COURSE, I WANT to HELP her. I CARE about her. Why doesn't Shyla do something for ONCE! I'm calling her.

Don't do that. Don't tell ME what to DO, I hate you!

OK, hate me, but call your mother and see how she is before you rail on your sister, ok?Snapshot 3Hello?Shyla, it's Lydia.

Hi Lydia, how are you? HOW am I? How the hell do you think I am?! I'm furious!

What's wrong?What's WRONG? Don't you KNOW!Know?Mom fell again last night.Is she OK? Lydia interjected quickly with great concern.

Yes,Lydia sighed with relief feeling her whole body relax not having realized it had tensed but acutely aware of the avalanche of pelting that was underway but not hearing what was being said.She's OK, the question is WHERE are YOU? And why don't YOU know about THIS? You are the first person on the Lifeline call list, you are the one who lives 2 doors away NOW, so where are you? And WHY don't you know about this?

Oh, I haven't check my voicemail yet tod-...

Well, LIFELINE called you, then ME, and I'm wondering WHERE the hell YOU are because the whole point of having Mom here and you buying our house is that you can look after Mom, right?

Well, yes, to be closer to Mom is part of it, Lydia. I'm in the country right now, we're just about to harvest, so is Mom OK? Yes, she's OK.

Good. Sorry you had to be woken up and to drive across town.We didn't drive across TOWN, we let the Fire department go since the last time we went, Mom got hysterical waiting for us to get there, we NOW live 45 minutes away, REMEMBER. And the last time, we went, Mom thought the lifeline had abandoned her - REMEMBER?

Oh, yes.Well, Lydia, this is why we have Lifeline because we can't always be there. No but this is the 5th TIME in 2 months, don't YOU think we should see about MOM going into a nursing home or getting more extensive help? This is dangerous!

Lydia, Mom doesn't want to go into a nursing home; she's enrolled in a day health program and she's happy with that. This is an imperfect situation, she's getting older, it isn't always graceful, but at least she's happy with this arrangement, and she definitely does not want to be in a nursing home - you know that.Well, maybe it's our responsibility as her CARING children to make SURE that she is SAFE! Oh, that's RIGHT, now you're the one who makes the decisions.Lydia, Mom is doing very well at home, she has a thorough support system and she is happy to be at home. You moved her out here to be closer against her wishes and she has been miserable - all of her friends are back in Wisconsin, well, those who are left of them.... to further confine her and restrict her for our convenience and peace of mind simply doesn't seem fair. SHYLA, this is NOT about MY convenience and comfort, nor is it about my peace of mind; you are going to see, mark my words... something tragic will happen to Mom. God knows why she made you the one to make her decisions.You DON'T CARE about her.Lydia, of course, I CARE about Mom, I just have a different understanding of caring. Snapshot 4Hello, Mrs. Lyon, how are you today? Natalie, a case manager at the Adult Day program, observed Elizabeth's gate as wobbly, but unchanged as Elizabeth Lyon sat into the seat in front of her for their regular appointment.Just fine dear.How was the weekend?

I had my granddaughter visit, she's home from college. She's quite a charmer really. We had a fun time and went out for dinner.That sounds like fun. And how are your girls?

Oh, well, you know, it breaks my heart that they are still quibbling, you know, they won't speak to each other. She sighed and looked despondent for a minute, then continued, But respectively they are fine.I know that has been a source of distress for you. Are you managing around the house OK? Any changes?

No, everything's just fine. That dear Lucy comes to help me in the morning and afternoon, and everything else is OK.Have you had any falls?No ...

OK, well, things seem pretty much the same. I'll check in with Shyla as I do routinely, and oh, I see here that Lydia left a message.

Did you have a fall over the weekend? There was a long pause.Elizabeth searched her memory. No, not that I can ... Oh, yes, just last night, I almost forgot. Don't tell the girls, you know they'll just worry or fuss, you know, but I guess I did. I got up to go to the bathroom and the knee gave out - it's the darndest thing... Natalie listened as Elizabeth went through the story about the firemen and the neighbor... but don't tell the girls, I don't want them to know.Natalie began gently, I know that you want to protect the girls and I want to make sure that you understand that the Lifeline Button calls both your girls homes before they call the fire department, only if neither child can assist you, then the fire department will come.What? The lifeline buttons tells the children, well, what a silly service. I don't want that, the whole point is so that they won't be bothered. I don't want the kids to know. What am I paying for this for then?Natalie continued, so the girls already know and from my records, it looks like this is the 3rd time this has happened in the last 2 months. Elizabeth looked at Natalie blankly, and realizing that Elizabeth was overwhelmed, Natalie stopped, I guess you might be tired today?A little bit, I don't know why, just a little fuzzy, maybe I didn't get enough rest last night. OK, well, I'll check in with the girls and I'll check in with you again later in the week.Interested Parties presented here:ElizabethLucy, the part time caretakerSarah, neighborLydia, daughter #1Jack, Lydia's husbandShyla, daughter #2Natalie, Case Manager at the Adult Day CenterQuestions for ReflectionHow might one approach this situation? What are the issues raised in this case? Is this an ethical dilemma? If so, how would you articulate the ethical conflict?Do you need any additional information? If so, what is it and why/how is that relevant?What knowledge (ethical, legal, medical, philosophical) might be relevant for analyzing this case?

What framework might be appropriate to assist thinking through this case?What might be a reasonable path forward? Are there multiple acceptable approaches? How would each of the different perspectives justify their response?Please leave comments, ideas, questions, and insights using the comments feature below. When you leave a comment, you may do so anonymously or with your name, but it would be very helpful if you indicated your role/discipline to assist clarifying your perspective. (RN, Geriatric care plan manager, family member, elder, caregiver, MD, MSW, Case manager, etc.)

COMMENTS

There are so many factors in this case-so many different people and perspectives involved.One of the first things that I noticed about the case are the amount of assumptions (or ways that we think about a situation based on our perspective, often in a subconcious manner) made by each individual. These assumptions color the way in which they interact with one another and how they view the possibilities for responding to the situation. For instance, Elizabeth makes the assumption that because of her age, it is normal to fall a number of times. One of the assumptions of the first daughter is that caring for her mother involves making sure she is safe. As we attempt to come to an ethical plan of care we must remember that each individual will come to the conversation with assumptions. I feel like this point is a common starting point for ethical learning and yet the conversations I have encountered regarding care planning are often void of this realization.Another element of the case is reflected by Elizabeth's inablity to remember. This information made me think about the process by which we decide when someone is incapable of making decisions for their own care. Often, memory loss occurs gradually-we have all experienced this in patient care. However, it seems that our decision to allow a patient to make the decisions about their care does not always reflect the same rate of loss of ability. In what ways can we improve the system to determine one's capability in relation to the gradual or quick change in mental capacity? Can we become more senstivie to the ways in which a participant/patient can still communicate about their care while still being responsible about keeping them safe?October 8, 2008 at 01:37PM | Nicole Berry | edit | removeNicole,Thank you for your insightful comments.Indeed, we often develop a perspective based upon partial information. When we don't realize our views are based upon assumptions, we may miss opportunities for seeing options and we may get 'stuck' in our limited view of the situation. A critical first step in developing a plan of care is to make sure that everyone has the same information and a shared understanding of the current situation and future trajectory.Here, as you point out, there is a divergence in the understanding of what "caring about Mom" means. For Lydia, caring means to make sure that Mom is safe and protected, so that Mom will not experience a preventable injury. Lydia fears that if her Mom remains at home alone, her Mom will suffer a fall or incident that would leave her severely debilitated or even dead. Lydia recognizes that her Mom may not want a more restricted environment, but Lydia believes that it is in her Mom's best interests to have a more restricted environment in the short term in order to have the likelihood of living longer. Lydia seems concerned about being a responsible child and protecting her mother from physical harm.One might say that she holds the view that her Mom's best interest is her safety and being protected from harm that could arise from being in an unmonitored environment. As you have noted, one might want to explore this understanding of "caring," whether she understands that even in a more restricted environment her Mom might experience a physical injury or death, whether her Mom's desire for independence has been a consistent theme expressed and to what extent honoring those wishes at this juncture may be important, whether there are other steps that Lydia might take to feel more comfortable with her Mom's safety that would not lead to moving her Mom to a more restrictive environment (having the house reviewed by an occupational therapy consultant, seeing about a home health aide in the evenings, etc).For Shyla, caring appears to mean allowing her Mom the maximum amount of independence and keeping her Mom happy - letting her Mom make decisions and to live as she wants. Shyla recognizes that her Mom may have a fall or some other incident that might leave her debilitated; it appears that Shyla is willing to accept this short term risk because Shyla feels that a more restrictive environment at this time, when her Mom doesn't want it, would leave her Mom more depressed. Shyla wants her Mom to be as happy as possible at this juncture and feels regret about her Mom's sadness that resulted from leaving her friends in Wisconsin so the girls didn't have to worry about Mom so far away.One might say that she believes that it is in her Mom's best interests to respect her Mom's decisions about her living environment and to honor her Mom's ability to accept the risks that the environment presents. One might want to explore with Shyla what in her mind might signal 'ready' for a more restricted environment and how she might approach a time when what her Mom wants is in conflict with what her Mom's actual needs are. Also, one might want to discuss with Shyla whether there might be a time when her Mom's decision making capacity might be impaired such that to honor her Mom's decisions would run the risk of 'abandoning' her Mom.There remains an open question about whose responsibility it is to fill the "gaps" in care, such as the falls at night. Whether there is a self interest in not having to "worry" about Mom that justifies or prohibits placing Mom in a more restrictive environment. Also, who is the appropriate party to be responding to these falls - the daughters, the Fire Department (public resources), or someone else?As you have recognized there is an indication of early memory loss that may, now or at some juncture, call into question whether Elizabeth has the capacity to make some decisions. At what point does a gradual loss of memory lead to a loss of decision making capacity is an issue frequently encountered in elder ethics and elder care. As you note, it is important to assess and reassess capacity as it may decline gradually, suddenly or fluctuate. An ethical priority is to honor a person with decision making capacity's right to make decisions about his/her well-being and care to the fullest extent possible. To honor the decision of a person who has decision making capacity is to respect a person's autonomy, but to honor the decision of a person who lacks decision making capacity is to abandon the person.As a person's capacity begins to diminish, we approach decision making capacity with the question of whether a person has the capacity to make a specific decision. Decisions of greater consequence require greater decision making capacity. At home, in adult day health centers and in clinical environments, people recognize that elders are often more alert in the morning, and care givers often seek to address questions at these times when elders are most likely to have the highest capacity for decision making. Also, an additional approach to empower elders in determining their care is to assess whether there may be consistency over time even in the face of memory loss. As you have noted, improving systems to assess capacity in the changing state (gradual, in flux, sudden) and increasing sensitivity to maximize the opportunities to honor decisions when people begin to have diminishing capacity are important.I look forward to hearing others' thoughts the issues you identified, these comments which reflect one of many approaches to considering these issues, as well as comments on other issues that remain in this case.

Originally posted on Planet Well blog and posted on NetSquared Mashup 2.0 Competition 2007Live WellWhat is the Idea?

Elders and the rapidly aging within the nation will receive the connection to resources and support that they need in a manner that enables them to Live Well independently within the community and supported by the community.

Live Well is a platform that will enable individuals and those who support them to meet their ongoing needs through a community network and that harnesses the potential of technology to integrate their support within the communities in which they live.

What will change in the world because this project happened?

As care delivery is increasing pushed out of acute care facilities, as people are able to live longer with the assistance of chronic care treatments, and as the population ages, there is a need to improve access to social services for social services professionals, family/caregivers, and the individuals who need external support to Live Well in the community.

We aspire to promote people's independence and ability to live in the least restrictive environment possible. When adequate resources don't exist, people require "placement" into places where their needs can be met. A huge gap exists in the availability of place as well for people who do not require such restrictive measures, yet still need assistance to meet their daily needs. At this juncture, our country lacks the infrastructure capacity to "care" for people "in facilities," which necessitates developing means to support people who require assistance to Live Well in the community.

Live Well will provide a technology platform to fill the capacity gap in a democratized way while supporting our deepest aspirations for promoting liberty to all and the pursuit of happiness throughout all stages of life.

What information will people interact with to make this change?

Live Well will create a virtual nexus for connecting social services with the public in a dynamic way and will enable actual meeting of needs for people who require assistance.

e.g. Mrs. Jane Hammond, an 87 year old widow, lives alone and is assisted by neighbors. A neighbor creates a Live Well profile for "Mrs. J" and the profile enables the neighbor to see what social services exist for Mrs. J's needs within her city. The profile also links into programs like "neighborhoods" on facebook. The neighbor is able to indicate on the profile that Mrs. J needs some cat food, that request pushes to the "neighborhoods" application and another person who lives within a few blocks but doesn't know Mrs. J is going to the pet store and picks up cat food for Mrs. J. As, well the neighbor indicates that Mrs. J needs a quart of milk. A young professional stops at the grocery store en route home and using his iPhone checks local grocery store needs from Live Well, his grandparents use it in Ohio and he isn't there so helps other folks out locally. Finding Mrs. J's request under "grocery needs in your area," he picks up an extra quart of milk and drops it by her house on the way home. Reimbursement can integrated with a credit/debit network established directly to the stores and integrated to interface with Medi-aid and Medi-care. Community service effort may be credited to the individuals through a "time bank" system and/or employer recognition for companies that encourage participation by their employees as "in kind" donations.

Live Well uses technology to facilitate meeting social support both through virtual connections and "live" connections. Live Well disrupts and innovates the way we live in and think about our "communities" by creating a platform that bridges the virtual community world and integrates it with our residential community, that bridges the communities of needs with the resources for benefits, and that brings people together across boundaries to care for our community wellness.

While this is local in the sense of meeting needs peculiar to the way of western development, transience, and independence, as more people become geographically mobile and the displacement of people from larger family structure trickles into the developing world as the unintended (untold) cost of industrialization and 'economic opportunity,' the development of this kind of platform will be universally applicable.

What else have you done in this cause area?

This is an area that is ripe to grow. There is a real need for harnessing technology to meet the needs of those already aged, most importantly for those entering into this group. I am involved in bioethics, mediation, elder care plan facilitation and elder ethics issues, and I am particularly focused on the needs and concerns of marginalized populations.

I worked under the leadership of an ex-IDEO health innovation startegist and product designer as part of the product development team at ePatients.com, a web 1.0 company that sought to create products and services for patients and their families in the acute and post-acute care setting. Following the implosion of that company (not due to the product/fundability), the product development team co-founded a venture to support patient adherence in the chronic care market through user-focused design of a web-based platform, but the market bust at that time made funding impossible although people "got" the value and concept, the profits margins weren't big enough and the SE world only in its nascent stages focused primarily on education.

At this juncture, I envision this application could be developed as a stand alone or integrated into a portfolio of another company.

What inspired you?An awareness that we are only as strong as the weakest among us and that though in the West, we fear aging, it is simply another process in the beautiful mystery of life. If we continue to deny it and fail to make the resources available to make this time of life one of possibility, the only people we fail are ourselves. I also see the grave economic disparities between our life in the West and those in other countries, and the influence of outsourcing and industrialization means that we are exporting an economic system that breaks down the social structure of those countries. It is my hope that if we can learn from those communities how to care for people within our own community and potentially reduce the export of practices that result in the transaction costs of destroyed social networks and/or to use technology to innovate the way we address this problem that exists increasing also in China and other countries.

What do you need at this juncture?

- Funders for initial development through Pilot- Developers to realize a beta version- People committed to harnessing technology and resources to meet local community needs as the first step in promoting the global wellness